I'm Around - Sorry to Worry Anyone

I appreciate the responses. Thank you.

Right now, at this moment on this day, I don't feel too bad. I'm tired, but not so tired that I can't function. Plus, my stomach is only mildly upset (compared to yesterday and last night where I hesitated masking up because I was concerned about vomiting). Because of it, my mood is okay. I've thought about and thought about it and have honestly concluded that when I feel better, my mood is better. It's not my mood (or depression) that's making me feel bad. It's feeling bad (physically) that's making me sad and moody.

But I know that this "halfway okay" feeling won't last all day and by early to mid afternoon, I will crash.

I believe, with ever fiber of my being, that something isn't right and that we CAN improve on something, somewhere, to make me feel better more often. Even though the documentation from my sleep study says everything is fine, that doesn't mean that SOMETHING isn't off or SOMETHING can't be done to make it better. Can the ventilator settings be better? Maybe. Do I need different equipment? Maybe. Do I have a problem with leg movements (whether it's PLMD or RLS or pain) and we need to fix it? Maybe.

Yes, my pulmo got my neuro involved and he's got me on Mirapex, but I'm not sure they're doing it because they think it's necessary or just to get me to shut up.

I know, without a doubt, that I wasn't THIS tired during the day before I started treatment. I also know that I need something at night because I have so much trouble breathing without it. It doesn't make sense to me that by treating the nighttime breathing problems, I should have to sacrifice so much of my life dealing with debilitating daytime fatigue.

I have connected with a lot of people that have a neuromuscular disease or defined Muscular Dystrophy. While many of them comment or complain about fatigue, NONE seem to have the level of it that I do and they seem to be able to continue to live the way they want, with modifications and compensations for the weakness and resulting fatigue. But they still are able to do things they want to do.

It seems like nobody wants to look to figure it out. It's so easy to shrug and say "with your disease, this is how it's going to be" or "this is the best we can do" or "everything looks fine to us" when it's not them that is suffering to this degree.

I don't want to give up and accept that this is the best it's going to be -- because I don't believe it to be true. I believe there is an answer and that I CAN feel better and be able to function better and actually live -- instead of just existing.

I just don't know how to get to that point. And it's hard to keep trying when day after day, all I feel like doing is laying in bed and sleeping. There's got to be an answer.

Your doctors don't seem to have much interest in working on the problem. YOU are unwilling to experiment with changing the settings on your machine. You may be out of luck until one of those attitudes vanishes. Which attitude is easier to change, yours or the doctors'?

Guest wrote:Your doctors don't seem to have much interest in working on the problem. YOU are unwilling to experiment with changing the settings on your machine. You may be out of luck until one of those attitudes vanishes. Which attitude is easier to change, yours or the doctors'?

How rude!

jbn3boys wrote:

Guest wrote:Your doctors don't seem to have much interest in working on the problem. YOU are unwilling to experiment with changing the settings on your machine. You may be out of luck until one of those attitudes vanishes. Which attitude is easier to change, yours or the doctors'?

How rude!

LOL -- thank you, jbn3boys. I was just coming in to address the comment.

First off, I will not engage in, or accept criticism from, someone who logs in as "Guest." If this poster IS a regular poster here and elects to let me know who they are, I would be happy to discuss my situation.

Second, my situation (and my equipment), is very different from most people here. Unlike probably 99% of the people here, I do not OWN this equipment. I RENT it and in doing so, have signed agreements about what I can and cannot do. Maybe that doesn't mean squat to "Guest" but I take my agreements seriously, especially when they're in writing. And they are.

Third, if I knew which settings to change and knew I could safely do so, I would request permission and would get it. My doctor has been very open and willing to let me play with settings, as long as I ask her and she feels they are safe.

Fourth, my equipment could easily be used to commit suicide. A couple extra painkillers and settings as high as they machine could go -- no more me. My machine can be dangerous if you don't know what you're doing. And I admit I do not know enough.

So, "Guest" -- if you feel you have any standing or right to criticize my not playing with my settings as YOU think I should, my response to that is "Kiss my big fat ass" -- and it will take you all day to do it.

jbn3boys wrote:

Guest wrote:Your doctors don't seem to have much interest in working on the problem. YOU are unwilling to experiment with changing the settings on your machine. You may be out of luck until one of those attitudes vanishes. Which attitude is easier to change, yours or the doctors'?

How rude!

Not at all. You are no friend of Madalot. She is addicted to sympathy. You are her co-dependent.

I am Madalot's friend. I have told her the truth. It probably hurts. When she gets done with a round of feeling sorry for herself, if she is willing to face the truth, she'll see that all the sympathy in the world is not changing her misery, and in fact, it's getting in the way of her making some real changes.

Madalot, I have been reading your posts for years. You are rejecting my advice, just like you rejected the advice of SAG and others who tried to help you.

How's that working for ya?

Madalot, you are stuck in a pattern. Your so-called friends, the ones who will show up in droves on this thread to castigate me, are rewarding behavior in your that is not helping you! You need to make some changes. Instead of communicating that to you, they simply reinforce in you the hopelessness that is keeping you down.

I want to see your life get better. Tough love, sure it hurts. But it can help, if you let it.

Guest wrote:Madalot, you are stuck in a pattern. Your so-called friends, the ones who will show up in droves on this thread to castigate me, are rewarding behavior in your that is not helping you! You need to make some changes. Instead of communicating that to you, they simply reinforce in you the hopelessness that is keeping you down.

I want to see your life get better. Tough love, sure it hurts. But it can help, if you let it.

Log in under your known name and I'll be happy to communicate and consider what you're saying. As "Guest" your words have no meaning to me, other than to make me laugh.

Or -- send me a PM. But this isn't going to get YOU anywhere with me (or anyone else).

I could register, but it would not make my words more true.

You don't want to hear what I might have to say that could help you. So long, and good luck with the sympathy, because that's apparently the only thing you can get here if you block out all the genuine help.

Guest wrote:I could register, but it would not make my words more true.

You don't want to hear what I might have to say that could help you. So long, and good luck with the sympathy, because that's apparently the only thing you can get here if you block out all the genuine help.

You're an idiot. There probably is some truth in what you said, but hiding behind "Guest" makes you a coward. A known poster here could say the same thing and I'd give it some thought. From you -- just buzzing.

And I have my suspicions about who you are. And you're not bothering me in the slightest bit -- I'm amused as hell, something I haven't been in a long time.

Well poo! I'm glad you're still around. Ignore the crazies. It is a public board, and there is no telling what's liable to happen. You can just ignore unwanted advice. Take care of yourself, and please check in periodically so we know how you are doing. I had asked someone last week if they had heard anything from you, so it's good that you posted.

Guest wrote:I could register, but it would not make my words more true.

You don't want to hear what I might have to say that could help you. So long, and good luck with the sympathy, because that's apparently the only thing you can get here if you block out all the genuine help.

I would say "What an idiot!". But that would denigrate the mentally challenged. Anyone who is so full of themselves that they believe they are the one and only person with the truth is a menace to themselves and others. The world is littered with the remains of such self-important people, whose last words were "See, this is how you do it! ...". The shame is they take innocent people with them.

Madalot wrote:I don't want to give up and accept that this is the best it's going to be -- because I don't believe it to be true. I believe there is an answer and that I CAN feel better and be able to function better and actually live -- instead of just existing.

I just don't know how to get to that point. And it's hard to keep trying when day after day, all I feel like doing is laying in bed and sleeping. There's got to be an answer.

There is an answer, and I gave it to you several times, and despite promising that I would not bring it up again, here it is again: wake-promoting agents.

Lots of people, even those without your neuromuscular condition, need wake promoting agents to function. All of us who suffer from EDS hope to fix the underlying problem and not have to resort to medication, but yet many of us do. This is the hand you've been dealt, and while Provigil or another agent is not going to give you a winning hand, it can improve it. You can use your increased energy to continue to look for underlying causes of your fatigue, and to enjoy the improved quality of your life. Assuming your doctor approves of your using these agents, it will be your choice whether to take advantage of this or to spend the little bit of energy you have lamenting that you don't have more.

If my response sounds unsympathetic, I apologize. I don't have a neuromuscular disease, but I have decades of significant EDS under my belt. Thanks to my stubbornness and unwillingness to take wake-promoting agents, I lost a lot of ground in my life that I can't have back. You can make the same mistakes I made, or you can "learn to shave off my beard" (or however the expression goes).

SleepingUgly wrote:

Madalot wrote:I don't want to give up and accept that this is the best it's going to be -- because I don't believe it to be true. I believe there is an answer and that I CAN feel better and be able to function better and actually live -- instead of just existing.

I just don't know how to get to that point. And it's hard to keep trying when day after day, all I feel like doing is laying in bed and sleeping. There's got to be an answer.

There is an answer, and I gave it to you several times, and despite promising that I would not bring it up again, here it is again: wake-promoting agents.

Lots of people, even those without your neuromuscular condition, need wake promoting agents to function. All of us who suffer from EDS hope to fix the underlying problem and not have to resort to medication, but yet many of us do. This is the hand you've been dealt, and while Provigil or another agent is not going to give you a winning hand, it can improve it. You can use your increased energy to continue to look for underlying causes of your fatigue, and to enjoy the improved quality of your life. Assuming your doctor approves of your using these agents, it will be your choice whether to take advantage of this or to spend the little bit of energy you have lamenting that you don't have more.

If my response sounds unsympathetic, I apologize. I don't have a neuromuscular disease, but I have decades of significant EDS under my belt. Thanks to my stubbornness and unwillingness to take wake-promoting agents, I lost a lot of ground in my life that I can't have back. You can make the same mistakes I made, or you can "learn to shave off my beard" (or however the expression goes).

Yes, you have mentioned it several times -- and you are NOT being unkind or unsympathetic.

I forgot to mention that I DID ask about this. They want to try addressing the cause first (Mirapex) and if that doesn't work, we'll discuss the Nuvigil (sp???) --

I did hear you and put it on my list of things to ask about.

Madalot wrote:I forgot to mention that I DID ask about this. They want to try addressing the cause first (Mirapex) and if that doesn't work, we'll discuss the Nuvigil (sp???)

OK, then an answer is right around the corner, and you just have to hang on until then! It makes sense not to start Provigil or Nuvigil (both are considerations) while you are starting Mirapex because the chances are VERY high that you will feel better with Provigil/Nuvigil and then you won't know if it's because of the Mirapex or not. So hang in there until you get through the Mirapex trial, and if it doesn't help enough, you'll do the Provigil/Nuvigil. In the meantime, take naps and view it as a solution to a temporary problem, and don't ascribe any more meaning to it than that.